Shh...Mum is Thinking

Wednesday, May 31, 2006

Quiet Moments: Illusions, Compensations and the Space Between

Illusions

My son has had a recent interest in optical illusions, so this week we’ve thrown a mini-theme on them into our usual home schooling work.

When I was a kid, the ink version of the illusion shown here was my own favourite. I copied it over and over, especially to kill time during high school classes. I loved the play between themes of age/youth, appealing/appalling; still do. I think the simpler version at right is more effective in terms of the illusion, but the Klimt inspired version was too fun to pass up. I enjoy the juxtaposition of themes in his work, it seemed natural he would spring to mind while painting the first version. Besides, I’ve always thought Klimt must have had so much FUN while painting, why shouldn’t I?

My son has been quite interested in these, hanging over my shoulder, “Oooo, she’s ugly-spooky, mum!” in a shivery, fascinated way.

I started painting these as a result of dwelling on the way we react differently to something solely depending on our perceptions. Like being proud of my son's special interests (maps, cars, street signs, this kid is GOING places! sez mum) pre-diagnosis, and then that dropping stomach feeling when worrying about his 'obsessions' post-diagnosis. Same child, same actions, different reaction to them due solely to my own perceptions.

This illusion came to mind...and in turn, the paintings sparked his curiosity about optical illusions in general.

Compensations…There are a number of daily household chores that I really don’t mind. Actually, I’m lazy and don’t really like the chores themselves, but because they are repetitive, mindless tasks there is the compensation of using that time to let my mind wander to topics that interest me.

SO…I’m washing dishes two days ago. The gears are turning, I'm lost in thought.

There’s a sudden voice at my elbow…

“Mum, there’s an army base that is real. It was on two different cartoons.”

I scramble back to reality.

“Hunh?”

“Mum, I know it’s a real place! Because it was on TWO cartoons!”

“So what's the name of the base?” I ask, groping to make sense of what he’s saying.

“Fort Knox, but that’s not the important part.”

I’m so confused, what on earth…?

“See, it was on Scooby Doo AND Dexter’s Laboratory.”

I’m missing something here, and I’m worried he’ll leave before I understand properly. Keep him talking, eventually it will make sense, I think.

“You’re right, Fort Knox is a real place, though I don’t think it’s exactly an ‘army base’. Do you know what they keep at Fort Knox?”

“Gold.” He frowns a bit.

“Yep, that’s right.”

He realises mum still isn’t getting it, so he tries again.

“Mum, I know it’s a real place because it was on two different cartoons. If it was only on one cartoon it might be made up, but if it’s on two cartoons it IS a real place.”

Suddenly it gets through my foggy brain—he’s less interested in sharing a piece of information, more interested in sharing the thought process that gave it to him. I almost missed that elegant bit of logic. Thank goodness he’s persistent.

I asked when he’d seen the cartoons, but he didn’t remember. Those seemingly unrelated bits of info were probably simmering in his little head for ages, just waiting for one of those lovely quiet 'down' times to hook up and become...Fort Knox! A for-real place, not made up!

The Space Between…

I’m pleased that my son is making progress with his handwriting; forming letters and words has been a difficult challenge for him. At one point, age 4, he refused for months to even hold a pencil or crayon, going so far as to give up his beloved car drawing after the frustration of seeing children in preschool write so easily. I remember him saying, in anger and frustration, everyone at school could write except me. I’m stupid, I’m stupid.

It’s been a long road to help him regain a feeling of competence, and I am mindful of that while we work. It’s hard to give advice or teach and at the same time avoid making him feel criticised. I find myself thinking on my feet as we go, trying to demonstrate ideas to him rather than explain them.

Yesterday:

“Honey, your letters are brilliant, but we need to work on leaving spaces between the words.”

Instant frown.

“There ARE spaces between the words!”

The spaces aren't any bigger than the spaces between letters, I think, and mentally scramble for a way to demonstrate without his closing down from the information.

“Well, have a look at this..."

Youcanbuytatoogumatthestoretoday.

He is angry and annoyed. He doesn't want to look at it.

I tell him he needs to try reading this if he wants to find the secret message, but this time I’ll make it easier.

I write it again with spaces.

He smiles.

Whew, disaster averted.

After homeschool is done we usually go to the little local grocer that’s in walking distance of our house. He has money for gum in his hand.

He picks his gum and goes to pay the cashier. She asks him a question; he misses it, staring at the array of candy on the counter. I poke him gently and he looks up, surprised. She smiles and repeats the question; he answers. I want to hug her. She’s the same girl who left a metallic golden-coloured beetle (miraculously still alive after sitting in the bright sun) in a jar on our front porch this summer with a note that it was for my son. She knows my son loves insects. She also knows he’s autistic. She is kind but matter of fact with him, and gives him a nice taste of ‘official’ type social interaction on an almost daily basis.

This morning…

He’s watching the educational children’s program I allow him while I get ready for our homeschooling day.

“Mum! Look! It’s a stick insect!” he cries.

The host is holding a twig on which there is a lovely bright orange stick insect.

“Wouldn’t it be funny if a dog ate it because someone told him to fetch?” laughs my son.

He and I both have a hard time getting the punchline of some jokes, but that doesn’t mean there’s no sense of humour there :-)

Sorry, I know this is rambling. This WEEK has been rambling, though, and a bit unfocused; often stressful, but with small, quiet compensations for our difficulties.

Friday, May 26, 2006

Choices, or...You Want Fries With That?

More Perseveration on the Autism Speaks Video.

I can’t get this video off my mind. A few days ago I had my say about the worst of what it presents and avoided the little niggly bits that were bothering me. Now seems like a good time to get the nitpicky stuff that’s bugging me off my chest.

Some of the difficulties touched on by the video are common problems most parents of autistic children have to deal with. Fair enough. I’d like to see more attention paid to the negative reactions we and our children have to endure in dealing with the public, but that really goes across the board for families dealing with many disabilities and neurological differences, not just autism. It would be nice to see more information presented to the public that calls for an increase in understanding and tolerance towards autistic and disabled people in general, children and adults alike. I’d like to see a greater understanding and acceptance especially in schools, both by students and teachers. Our children have a lot to offer and everyone can benefit from increased tolerance.

I don’t think anyone would argue with that.

More support is needed to get our kids into higher education and more work is needed to ensure our ability to perform in the workplace.

These are things we all need to be concerned about, goals we can all agree to work towards together. Things that Autism Speaks SHOULD be talking about.

The additional parts of the video that are really eating at me are the misrepresentation of what is ‘necessary’ for our children and the level of stress that creates on families. Many of the problems discussed here are NOT common to all families dealing with autism, they are problems associated with the choices made by SOME. I keep seeing astronomical figures presented about the cost of raising an autistic child, and I have to tell you, I simply don’t get it! My child doesn’t cost any more to raise than any other child, in fact, since I’m home schooling him, he costs less. I can back that up, btw. It’s the simple truth. I have a habit of checking stuff like that.

I would imagine most ‘parents of’ would never have to complain about being $50,000 in debt because we ‘had to create this environment’, the room full of (probably overpriced therapeutic) TOYS we’re shown in this film. Honestly, my eyes almost popped out of my head when one mother waved her hand towards that room, that supposedly ‘therapeutic environment’. Holy guacamole, batman, that’s a lot of TOYS!

My kids indoor toys, combined, fill exactly two plastic stacking bins each with three drawers. It seems like a lot to me, especially when it’s distributed evenly across the floor of my house. But why on earth are we expected to think it’s necessary to stock rooms full of over priced fripperies just because our kids are autistic? Filling an enormous room full of expensive toys is a CHOICE. That’s not a necessity. I tend to think a cup and a bowl of water to splash in for a little one or a spoon to dig holes in the garden is more therapeutic anyway. Balls to kick. Books. Paper to make into airplanes. Blankets to wrap up nice and snug or an office chair to spin in together….effective, cheap, and they’re definitely therapeutic. In my opinion basic open-ended activities and materials are more enriching to a child than any hunk of plastic, anyway. Oh, except Legos. Those are a necessity, ha.

Medical therapies that are not medically necessary, vitamins, supplements, expensive extra medical procedures that are mentioned by most of the parents here, again, are usually a choice only when one chooses to subscribe to a school of thought for therapy or biomedical interventions that require them. Perhaps a parent who is buying into something like that considers these necessities, but honestly, are they? I don’t want to put someone down for the choice they make, but in the end that’s exactly what it is. A choice. Not a choice shared by all parents of autistic children, not a necessary expense for an autistic child.

The level of stress these people are complaining about has a lot to do with the direct result of the burden these choices create on their time, energy and finances. Ok, you’re stressed because you have to write down all your child’s behaviours. That’s a choice. You have to transport your kids to a constant round of therapies? Is it really necessary? Somehow I doubt these people are talking about your basic OT, speech and PT, we’ve done those and it wasn’t the ‘constant round’ of therapies these mums are complaining about.

We also did that initial round of checkups to make sure there were no further medical difficulties for my son. The genetic testing, MRI’s etc, were all finished within a couple of months, what’s with this constant round of doctors these mums are complaining about? Unless there are medical problems in addition to autism, why are these people complaining about constant rounds of doctors visits?

I have a feeling that is, again, more to do with choice than necessity. Biomedical interventions, especially, seem to be particularly stressful from what I’ve read, both in the expense and in time and extra effort. Again, that is a choice, and certainly not the choice I see most family’s making.

I can’t understand why these problems are presented as something that is shared by all autism families. It’s simply not true.

I’m lucky. I can *choose* not to buy into the misery dished out by this film because I have enough experience now to know better and the luck to have avoided these (ok, to me they seem like fads) when we were vulnerable. Those who are new to autism don’t have that experience, don’t know the more practical side of these issues, and are likely to be scared out of their wits watching this. And those who have no experience at all with autism will see this and look at us with that pathetic expression of pity I’ve come to hate so much--and darn, it I’m proud of my kid! I don’t want anyone’s pity!

I once saw a tee shirt I liked a lot; I think it’s apt to quote the words it had here, since it expresses exactly how I’ve come to feel:

Monday, May 22, 2006

Info 'Bites'

Answer at the bottom of the page.

Yeah, I know, it's not exactly a burning question. This will be our homeschooling surprise question tomorrow. I try to have a couple everyday-- just a little bit of information or two from the previous days studies to see how well my son's retaining and for a bit of a fun challenge. This little info 'bite' was funny; we both laughed while we watched a lady try one of these while exploring the Amazon rain forest. She was a bit horrified and squealed a lot. I'm pretty sure he'll remember the answer :)

I found this interesting reading. The author speaks of the superficial similarities and very important differences between McCarron and his own mother raising his older autistic sister. A very good, thoughtful article.

I've spent a lot of time these last few days looking back to when my son was three, in fact, looking back to when I was that age, the difficulties he had, those I remember having. Its hard not to wonder about this little girl, this mother, why this happened.

But in a way, I don't really want to know. Knowing her reasons seems somehow disrespectful to the little girl.

I hope I didn't startle anyone into spilling their coffee yesterday with my curbie kit. I've seen some things this last year that I simply don't want to have to deal with, and I agree with my husband on this point: this is a necessity for me if I want to blog at all.

I've thought a lot about this...and decided I need to be aware of my limitations at the moment. As much as I feel the need to discuss our life, things we are dealing well with and things we are striving to understand better...I don't think it would be fair to my family for me to end up in a flame war. I did once, about something I felt so strongly about I simply didn't walk away when I should have. I ended up physically ill and completely run down, with no one to blame but myself for my stubborness.

Besides, if someone came on here and called my son names as I've seen happen to others, I think I'd just fall apart.

The answer, btw, is 20. Twenty coconut maggots per day will keep you on your feet long enough to find civilisation. They said they have a pleasant coconut milk taste, but the texture was a bit.

Um.

Crunchy :-O

Whoa! I just used spell check (for the first time on here) You'll never guess what word it picked out as misspelled.

Sunday, May 21, 2006

No, This Ain't Your Playground

My husband is worried about me. When I told him I wanted to start a blog, he said "What! Are you crazy? There are some real nut burgers out there."

See, I've kept him updated on the state of things in autismland, so he's well aware of the goings on I've witnessed this last couple of years, this year in particular. He doesn't want me upset and stressed, he doesn't want us to have to worry about being tracked down and harrassed by curbie/biomed/therapy of the month weirdos. I don't want that either, so...

So, before I ever put fingers to keyboard for this blog, I promised I would blog anonymously. Secondly, I promised I would make this statement:

This blog does not welcome curbie arguing, nasty comments about autistic people (yes, that means you, JB jr) or other highjinks of the underhanded, harrassing and juvenile kind.

Considering the amount of money and political backing curbies are getting from the likes of Autism Speaks, Generation Rescue, etc, ad nauseum, there should be no need to come cause any trouble on my humble little blog. There should be umpteen other places, all probably well funded and advertised in the New York Times and the next commercial break on your boob tube to turn to if you want to talk cure and and say insulting things about people like my family.

This ain't one of those places.

Now I have THAT off my chest...

Tomorrow my son and I start the adventure of studying South America. We're starting with a general overview of the continent, major geographical features, names of countries and flags of same. I have a nice little book, a traditional native story from the Amazon River basin to whet his appetite, a craft (we make our own books about each theme we study, tomorrow he decorates the front in addition to the work pages we'll add), and a bar of chocolate lol. Chocolate IS from South America, it's educational ya' know.

We're also going to use that time and theme to practice his own personal idea of torment, handwriting. He's progressing well with his writing now, strangely enough, since I've agreed to let him have a go at cursive. Isn't that funny, they say our kids hate cursive. He WANTS to learn it, in the beginning he said because he was hoping it's easier to write if you don't have to lift your pencil so much :) He's had two weeks with cursive, and is actually doing pretty well. The main achievement has been he's not so stressed and is enjoying it. That's a biggie in my book.

I'm so proud of his continued interest in different cultures around the world. Last year it was Asia, and especially China. That was a blast. I think it was his love of Asian food that sparked that interest, but once we started learning about the culture, the food, the stories and history, he was really hooked. We started that term learning about the continent of Asia in general, then worked our focus down, down to China. I let him lead the way through most of it, presenting general information and adding new topics as his interests were piqued on different aspects of the country.

I'm keeping positive thoughts and hopes for tomorrow as we begin a new leg on our journey learning about this big old world. I hope he enjoys this as much as he did Asia.

Friday, May 19, 2006

Autism Speaks Once Again Fuels the Culture of Despair

Has anyone out there in Autism land missed the new Autism Speaks video?

You? You missed it?

Lucky you.

I intended to comment on several points on the video, but it angers me too much. Instead, I'll cover the worst of it. And I have a point to make afterwards.

Oh, yes, indeed.

THE VIDEO

The woman who is holding her daughter, little girl about 8 in a pink shirt? The woman who is saying how her daughter is just like a baby, needs constant attention, that she never gets a break, her life is constant misery because of this child. She's HOLDING that child right there in her arms while she says it. The little girl, during this diatribe, says "Crying?" Turns mum's face towards hers. "Are you crying?" Kisses mum a few times.

Mum is not impressed, you can tell.

Mum wants to talk about her pain and misery at dealing with this autistic child.

Mum doesn’t want kisses.

Kisses are just another interruption, you can tell that much.

This same mum, later in the video WITH HER AUTISTIC CHILD IN THE ROOM as though this was nothing to feel coy about. Says. She contemplated. Driving this child off the George Washington Bridge rather than put her in a school for autistic children. With this child standing in the same room with her. Casually, she says this. It is not a moment of high emotion for her, she is recounting something she has probably talked about many times. She says the only reason she didn't do this was because she has an NT daughter. She would have killed her autistic daughter and committed suicide if it weren't for her NT daughter.

Honest! Right in front of her daughter, she said this!

This video is full of shmucky pity party stuff. I’m not going to get into the rest of it; the retch-o-metre is quickly reaching projectile stage… This woman saying these things in front of her daughter stood out to me as the worst of the video, and probably the worst bit of propaganda that I've ever seen about autism yet.

You want money for autism research, Autism Speaks? Great, knock yourself out. Do you have to run your children (and ours) down to their little faces to get it?

This is really putrid stuff.

But wait! There really is more.

THE RESULT OF DEGRADING AND DENIGRATING AUTISTIC PEOPLE

And this is a real world, actual and direct result from this ‘culture of despair’ type propaganda.

About a mother who confessed to suffocating her recently diagnosed autistic daughter. The mother said she wanted to end her daughter's pain, and her own as well. The victim was a three year old child! Why did this mother feel so much despair for her daughters future, why had she given up hope?

Those of us with autistic children and more experience under our belt than this mother had know the likely answer. This woman was probably faced with information very similar to what is found on the Autism Speaks video. It's everywhere; we parents researching to learn about autism are faced with this tripe at every turn. There is no escape from the constant, relentless despair that is being dished out, usually in the name of 'helping' autisic people. On reflection, and with time and thought, most of us will eventually realise there is usually a monetary reason driving this type of propaganda, and can take it for what it's really worth.

But what about this mother? Why did she feel such despair for the future of a three year old child? Did anyone bother to tell her there is hope? That autistic children DO progress, and often beyond anything their parents had dared hope for at the age of three?

Like I said, curbie organisations want money to fund their aims. Fine. Bloody well fine.

Stop stomping all over our lives to get it. We're worth more than that. And so are our/your children.

I’d like to leave you with this thought.

Our children are not here on this earth to fulfill our needs and wishes. We know that intellectually, do we know it in our hearts?

Yes, it’s hard in the beginning learning how to deal with autism and coming to terms with the fact that our children’s lives MAY (and that’s a big MAY) not turn out exactly as we had envisaged before their births. But there comes a point when it’s dead wrong to let our loss of a dream causes real life hurt to our own children.

No child should have to sit and listen to their mum casually discuss having contemplated their murder. And no child should have to fall victim to a parents loss of hope to the extent that child in Morton did.

As parents, we need to stand up and cry “FOUL!” at organisations that are building this culture of despair to their own monetary benefit.

We need rise from the ashes of OUR wants and dreams, and deal with what IS, to the benefit of our children and ourselves.

This may not benefit Autism Speaks or those who want to sell us the latest cure. But it ~will~ benefit our children and our families.

Wednesday, May 17, 2006

In the beginning was the word...

Oh look, I have a blog. I've wanted one of these for ages.

What on earth do I do now?

Shh...mum is thinking. I read an interesting article in New Scientist recently. 6th of May issue, pg 8. "Free will-you only think you have it". I won't pretend to understand quantum mechanics :-) But it is intriguing to think we are living lives that may be predetermined (or even preordained, if you're of a religious bent).

So perhaps where this blog goes, or doesn't, is inevitable, anyway.

I want to talk about autism. I want to talk about homeschooling an autistic child. I'd like to talk about raising an autistic child, as an autistic adult. I want to talk about art. I'm not much in the mood for chatting on forums, conversations take up too much brain power and energy when I have the need to use it on other things. Like painting, raising an autistic child (as an autistic adult), homeschooling. I feel I'm only alloted so much conversational abilities right now, I'm saving them for where they're most needed: my family.

So why am I blogging, you ask.

I'm working my way through a number of different issues. I think it might be useful to present them. Perhaps someone out there will have a useful comment to speed me on my way. Perhaps this will be useful to someone else out there. Mainly, though, this is a way to think out loud. Think my way through things.

Here's an example of what I mean. I had to stop writing a paragraph ago, I heard a thump on the back porch, where my 7 year old son was playing. I ran out back...

"Hey, little dude, is everything ok?"

"Yeah, I'm just throwing rocks through these spider webs to see if it can stop them"

"Honey, I don't think a spider web is strong enough to stop a rock."

"But, mum, why do they say spider webs are stronger than steel if they can't stop a rock? Steel stops rocks."

"Sweetie, if you spun out a piece of steel as thin as a spider web, it probably wouldn't be able to stop a rock either."

He thinks, taps his pursed lips, as he always does while the gears are turning.

He's a little scientist at heart. He comes by it honest, his mum and dad are the same way. We live our lives trying to understand, not really trusting the information we get. Throwing rocks through spider webs to see if they're REALLY as strong as steel, and trying to figure out the results.

Links

This website is part of the autism assembly, a coalition of members of the autistic community who share the common goal of seeking acceptance for those on the autistic spectrum, who aim to educate about autism, and who are not seeking a cure for autism. This is part of the global autism rights movement.